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  • PF glaucoma drops burn so bad, is this normal?

    So my pressures up and I’m on PF glaucoma drops. They hurt sooooo bad. Like debilitating pain...as if I put chemicals in my eye. Is this normal? I think I have to take it anyway. So I will not stop yet. But I’m wondering if I should bring this up to my doc immediately. Just doesn’t seem right. I am crying from the pain. Pic enclosed of medication.

    Thanks!
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  • #2
    Originally posted by Dowork123 View Post
    So my pressures up and I’m on PF glaucoma drops. They hurt sooooo bad. Like debilitating pain...as if I put chemicals in my eye. Is this normal? I think I have to take it anyway. So I will not stop yet. But I’m wondering if I should bring this up to my doc immediately. Just doesn’t seem right. I am crying from the pain. Pic enclosed of medication.

    Thanks!
    I'd definitely bring it up to your doctor. Call today and see if you can get an appointment in the next few days.

    In the meantime, some things to try:

    First, try keeping the vial of glaucoma drops that you'll be using next in the fridge (and the vials you're not currently using can be stored at room temperature or per the manufacturer's instructions). This way when it's time to use it, it'll be cold... it'll probably burn a lot less if you put it in cold compared to room temperature.

    1. 15 minutes before you put the glaucoma drops in, use a drop of the most soothing artificial tears (or serum drops) that you have. The idea is to ensure your eye is in the most soothed state possible before you go and peeve it off with the glaucoma drops.
    2. Use the glaucoma drops. (Remember to store it in the fridge so when it's time to use it, it'll be cold... it'll probably burn a lot less if you put it in cold compared to room temperature.
    3. 15 minutes after using the glaucoma drop (i.e. this way you allow the medicated drop time to absorb and do it's thing), put in a drop of the most soothing artificial tears (or serum drops) that you have to rinse out any remaining medicated drop that's irritating your eyes. (** read the patient info insert to double check what the manufacturer recommends in terms of how long to wait after using this glaucoma drop before using other eye drops... if, for example, the manufacturer says to wait 20 minutes, or 30 minutes, then do that instead of the 15 that I suggested).

    See if this helps cut down on the irritation you're experiencing. When I first started Restasis, I had to do this because if I didn't, the pain from putting in Restasis was indeed debilitating, and lasted for hours. But if I followed the 3 steps detailed above, it was much better (discomfort only lasting 15-30 minutes post-application) and the benefits of Restasis outweighed the negatives.

    One more thing.. how often are you using these glaucoma drops? If you happen to have a bedtime dose, try using that last dose of the day at least 1 hour before bedtime so you'll have a chance to get any leftovers out of your eye before you sleep. If the med is irritating and you sleep with it on your ocular surface all night, it will only cause greater irritation. Whereas if you use it at least an hour before bedtime, you'll have a chance to flush it out with artificial tears, plus blinking.

    Comment


    • #3
      Originally posted by SAAG View Post

      I'd definitely bring it up to your doctor. Call today and see if you can get an appointment in the next few days.

      In the meantime, some things to try:

      First, try keeping the vial of glaucoma drops that you'll be using next in the fridge (and the vials you're not currently using can be stored at room temperature or per the manufacturer's instructions). This way when it's time to use it, it'll be cold... it'll probably burn a lot less if you put it in cold compared to room temperature.

      1. 15 minutes before you put the glaucoma drops in, use a drop of the most soothing artificial tears (or serum drops) that you have. The idea is to ensure your eye is in the most soothed state possible before you go and peeve it off with the glaucoma drops.
      2. Use the glaucoma drops. (Remember to store it in the fridge so when it's time to use it, it'll be cold... it'll probably burn a lot less if you put it in cold compared to room temperature.
      3. 15 minutes after using the glaucoma drop (i.e. this way you allow the medicated drop time to absorb and do it's thing), put in a drop of the most soothing artificial tears (or serum drops) that you have to rinse out any remaining medicated drop that's irritating your eyes. (** read the patient info insert to double check what the manufacturer recommends in terms of how long to wait after using this glaucoma drop before using other eye drops... if, for example, the manufacturer says to wait 20 minutes, or 30 minutes, then do that instead of the 15 that I suggested).

      See if this helps cut down on the irritation you're experiencing. When I first started Restasis, I had to do this because if I didn't, the pain from putting in Restasis was indeed debilitating, and lasted for hours. But if I followed the 3 steps detailed above, it was much better (discomfort only lasting 15-30 minutes post-application) and the benefits of Restasis outweighed the negatives.

      One more thing.. how often are you using these glaucoma drops? If you happen to have a bedtime dose, try using that last dose of the day at least 1 hour before bedtime so you'll have a chance to get any leftovers out of your eye before you sleep. If the med is irritating and you sleep with it on your ocular surface all night, it will only cause greater irritation. Whereas if you use it at least an hour before bedtime, you'll have a chance to flush it out with artificial tears, plus blinking.
      I want you to know I tried all these tactics, thank you. My eyes aren’t really dry much anymore. But I still did the serum before and after. That helped a lot. So putting it in the fridge did nothing lol. Maybe made it worse but I suspect it’s because the drug is really penetrating into the eye. I don’t think it’s a surface issue if you follow me here. But I will say it’s getying easier to take. I’m wondering if I’m just being a baby sometimes. I genuinely question if I’m just weak. They said as long as there’s no itching or burning later in the day, you’re fine. So I just have to suck this one up. Looks like this is going to be another forever type thing. It’s very very weird...but I have such mixed feelings. Part of me is weirdly relieved that this was genetic and I didn’t cause it. Then I’m like, holy shot this is genetic, I’m sick. It’s weird. Thanks for the advise though. Part of this is that I’m doing so well, putting those drops in makes my eyes feel like they did at the beginning. It’s like post traumatic stress.

      Comment


      • #4
        Originally posted by Dowork123 View Post
        But I still did the serum before and after. That helped a lot.
        Excellent!

        Originally posted by Dowork123 View Post
        So putting it in the fridge did nothing lol.
        Fair enough.

        Originally posted by Dowork123 View Post
        I’m wondering if I’m just being a baby sometimes. I genuinely question if I’m just weak.
        Oh no, no, no, no, NO. Seriously. Do not - not for 1 second - think that.

        First, it's possible that if you're having a lot of mental stress that your perception of pain is heightened. But that doesn't mean it's not real, only that you're feeling a more intense version of it... and anyone would find it hard to take. And if this is the case, then by all means it's reasonable to recognize it, and try to alleviate it.

        Second, it's possible that all this time with super irritated eyes has sensitized your corneal nerves and that they are now over-sensitive to irritation compared to a normal eye (even though your ocular surface is doing good now). This can't be seen by your doctor. It's essentially invisible. But nonetheless, it's real, it happens to people, and it's a plausible, possible explanation for your sensitive eyes.

        But seriously, do not let anyone - even yourself - convince you that you're being weak about this. It's real. And the logical response is to be like "this isn't acceptable, I need it fixed". Trust yourself. If it feels bad, it's perfectly reasonable to say so, look for ways to alleviate it, and not accept that there's nothing that can be done. Because usually there IS something that will help, even if it's no miracle cure.

        Originally posted by Dowork123 View Post
        Part of this is that I’m doing so well, putting those drops in makes my eyes feel like they did at the beginning. It’s like post traumatic stress.
        I can relate to the post traumatic stress thing... a relapse can take you right back and it's scary to have the mind go there.

        Comment


        • #5
          Are you still on steroids Dowork cause that could be causing the ocular pressures to increase.

          Comment


          • #6
            Originally posted by farmgirl View Post
            Are you still on steroids Dowork cause that could be causing the ocular pressures to increase.
            I am, but it’s not the steroids. I mean clearly it’s also the steroids, but what I mean is that I have a genetic and structural problem that doesn’t allow fluid to drain properly. I get spikes in iop because of that. In one month, I was assured I’ll be seeing one of the top glaucoma doctors in the world. We will do a test with dye to reveal if in fact I’m not draining the fluid from my eyes. It was clear to see on camera I have this ridge in the back of my eye that’s complicating things. So yeah, I’m on steroids that’s not stopping, it can’t. I do believe though that soon I can go to every other day. When I’m on steroids EOD my pressure is under 10. But long story short, I need the glaucoma drops regardless of the steroids. Been a weird ride.

            Comment


            • #7
              On a side note, the drops are WAY easier to deal with. They still feel like acid in my eyes, but it’s 50% better.

              Comment


              • #8
                I think I’ve been taking that same drop you are (is it Cosopt PF?) for the past year or so. These stung for me too, but its true you can get used to it over time. I’ve taken a couple other glaucoma drops prior to this which I thought stung a little less, but they were not available preservative-free from the regular pharmacy like these are. My insurance recently stopped covering Cosopt PF, so instead of paying like $200 a month (one box) for it, my retina specialist gave me an out-of-state pharmacy that charges $45 a month, if by chance you want that pharmacy let me know and I can PM to you. Hopefully your insurance is better. And likely you can also get it from compounding pharmacy preservative free.

                My cousin was born with a glaucoma-inducing condition so he has been taking glaucoma drops all his life, and has been stable and fine. So glaucoma can often be managed well if treated and regularly monitored by a good retina specialist.

                Hopefully you can eventually get off steroid drops. I do have early cataracts my eye doctors believe are a result of using steroid drops on and off for several years. An article Rebecca shared as well as other articles I read showed cataract surgery can cause or worsen dry eyes, which we all do not need!

                Comment


                • #9
                  One of my biggest fears is that I will eventually need cataract surgery to be able to see. Not sure I could cope with getting bad again since I am doing so well these days.

                  Comment


                  • #10
                    farmgirl Yeah, I’m right there with you!

                    I think it’s important for people to keep a running list of what steroid drops they took, the dosage, and for what period of time, to review with all eye doctors they see, before being prescribed more steroid drops. Actually this is important to keep track of for all meds and treatments taken, but especially steroid drops because of potential serious side effects.

                    Comment


                    • #11
                      I took combigan. Yes it stings.

                      Comment


                      • #12
                        Originally posted by Hokucat View Post
                        I think I’ve been taking that same drop you are (is it Cosopt PF?) for the past year or so. These stung for me too, but its true you can get used to it over time. I’ve taken a couple other glaucoma drops prior to this which I thought stung a little less, but they were not available preservative-free from the regular pharmacy like these are. My insurance recently stopped covering Cosopt PF, so instead of paying like $200 a month (one box) for it, my retina specialist gave me an out-of-state pharmacy that charges $45 a month, if by chance you want that pharmacy let me know and I can PM to you. Hopefully your insurance is better. And likely you can also get it from compounding pharmacy preservative free.

                        My cousin was born with a glaucoma-inducing condition so he has been taking glaucoma drops all his life, and has been stable and fine. So glaucoma can often be managed well if treated and regularly monitored by a good retina specialist.

                        Hopefully you can eventually get off steroid drops. I do have early cataracts my eye doctors believe are a result of using steroid drops on and off for several years. An article Rebecca shared as well as other articles I read showed cataract surgery can cause or worsen dry eyes, which we all do not need!
                        It’s cosopt PF and it’s 185 I can get it for 145...yes please send me the info of the pharmacy. It would be nice to pay 45. Thank you! I have really good insurance, they will NOT pay fir PF drops.

                        Comment


                        • #13
                          Sure, will PM the info to you shortly!

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